This has been an issue for several years. A combination of strenght problems, muscle spasms and coordination issues has made cooking slightly scary, but in addition to those issues, I also don't register heat normally anymore and it seems once I do, I'm unable to react as quickly. Now, I'm finding that my hands seem to overreact to heat as well. For example, when just passing my hand over a steaming pot, they turn bright red, feel similar to second degree burns (which I've had several times) and remain hot. I have burning pain constantly, but this is different. I've experienced color changes and shiny skin, but this is going from normal to fire engine red in a matter of a few seconds. Actually, I think I saw the color change, before I felt the pain. Taking breakthrough pain meds returned me to baseline levels and there was no lasting issues. It seems like the way my body responds to heat is becoming more dysfunctional. Problems with cold temps seem to be increasing as well. If I try to hold something cold from the fridge, my hands register it like it's from the freezer. So while I couldn't handle prolonged exposure to cold in the past, now any contact is a problem. I was lucky to discover glasses with plastic grips that I can use for tea and cold drinks, which has helped at least with that.

Has anyone else experienced these same issues? Did you develop them earlier on? Have they continued to get worse? I'm 10 years post onset, btw.

I'm concerned that it's just a matter of time before I have a serious burn. I've had countless small ones... Losing the ability to cook would force me to have to have help with much greater frequency... Something I'd prefer to avoid for as long as possible. I'm not sure if I'm gambling that nothing bad will happen, or if I'm being paranoid...

Thanks in advance!

I have the exact same issues that you describe. In addition, sometimes when I get into a very warm epsom salts bath the bottoms of my feet turn deep purple, almost black. (The first time I saw it I thought my feet somehow were quite dirty and I tried to scrub it off.)

Passing my hand over steam causes the same reaction that you have. Unfortunately my symptoms have become progressively worse.

Meds have had no effect on my color changes. As a result I have not cooked in well over a year-until last week.

Since I began my current round of tDCS treatments the color issues have greatly improved. The bottoms of my feet rarely change color. Steam is no longer effecting the color in my hand. During the past week I have prepared several meals with assistance. My hand no longer goes into a stiff claw.

I did not realize how miserable and dangerous these symptoms were until they started to improve.

You are not alone. There is hope for improvement!

I haven't had the RSD in my hands for very long...but I do have a sort of delayed response to heat. I noticed this when I grabbed a plate of hot food and it wasn't until about 30 seconds after I was holding it that I realized it was burning my fingers (which were on the bottom of the plate). I also have a hard time judging temperature. Cold/cool anything I am obviously very sensitive too...but even with heat I just don't seem to feel the heat. My boyfriend brought me a bowl of "hot" water to rinse my hands after I tried cleaning out a pumpkin for halloween (not my smartest move ever btw) and even though I could see the steam coming off the water it felt cool to my hands. Very odd...you would think after how cold my hands were from the pumpkin that that the water would feel that much warmer to me...but it didn't.

Just wanted to update, I had a doc appointment today. (I was trying to get responses hopefully before I saw him.) He pointed out an important fact, the thing that freaked me out was that it appeared I had suffered a severe burn, when in fact, it was a temporary over reaction of my sympathetic system. He agreed that the best course of temporary action was to use breakthrough meds, which helps prevent flares in my case. He wasn't surprised that my sympathetic system continues to gradually decline, and thinks Ketamine offers me the best chance for possible remission. If Ketamine fails, then we'll discuss the next option, and so on.

That makes sense...I'm not sure exactly how we're supposed to really tell the difference between a burn and our burning pain in a situation like that when the flare is caused by the heat.

Cooking is dangerous for me...a couple of months ago I burned myself when hot oil splashed onto my face, arm, and leg. That was easy to tell that it was a burn though because the skin blistered up and everything. Since then I have been extremely cautious when in the kitchen.

I collect new burn marks every couple of weeks...my prior one was from oil as well. There was a blister and red mark that I was expecting to become a scar.

This last time during the steam incident, had they been real burns and not just a sympathetic reaction, I wouldn't have been fine the next day when my breakthrough meds wore off. There would have been pain, there would have been marks.